Day One: After You’ve Tested Positive For HIV

Adapted from original prepared for the ACE directory by Al McKittrick

A positive HIV antibody test can ruin your whole day or your whole week. It could be the hardest news that you’ve ever had to deal with. But don’t despair! It’s scary, but it is not a death sentence. Today, many of us with HIV are alive and well many years after becoming HIV positive. There is still not a cure, but with all we’ve learned over the course of the epidemic, and with the development of new drugs, HIV is becoming a chronic manageable disease. But the real work is up to you. Getting informed and taking charge of your health will help you make the best of your situation and the ACE directory you are holding in your hands can be very helpful in accomplishing that goal. You may feel very alone right now but you are not. There are over 12,000 people in the State of Colorado living with HIV and a lot of agencies to assist us in managing this disease. Welcome to our community. Before you get started, here are just a few basic things to remember.

#1. You need to have a doctor who is a specialist in HIV.

Studies have shown that your chance of survival is much better if you have a doctor who treats people living with HIV on a daily basis. HIV treatment is constantly changing and a provider without a lot of HIV care experience or many HIV patients may not have time to keep up on the latest developments, so find a specialist. You can find them through a Linkage to Care specialist in your area. Consult the Linkage To Care info page.

#2. Be patient with yourself.

Start thinking about getting healthier. Reducing or stopping your use of alcohol, nicotine and recreational drugs will help you stay healthier longer. So will eating nutritiously and adding vitamins and exercise to your daily life. Don’t beat yourself up about being HIV+; it will only keep you from getting on with what you need to do to survive. A few days of feeling sorry for yourself is OK but a couple of 2 years of denial is not. You can seek out help in the Counseling Services Referral List. If you need help quitting or limiting alcohol or drug use, you’ll find support groups and assistance in that same list. Seek out hugs and support from friends and family. Be careful who you discuss your status with. It should be on a need to know basis (doctors, nurses, sexual partners, AIDS service organizations). Be aware that discrimination against someone who is HIV+ is forbidden by the Americans with Disabilities Act.

#3. Don’t put yourself or others at risk.

When you are HIV+, you can be re-infected again and again if you have a partner who is positive or if you share needles with someone who is also HIV+. This can just make treatment more difficult and lessen your chances of survival. Of course you do not want to give HIV to someone who is not positive, so safer sex needs to become your mode of conduct. Mothers who are HIV+ should not breast feed their children. There are many organizations listed in this book that can give you information on safer sex, disclosure, and how to keep from infecting anyone else. Comprehensive Risk Counseling Services are available through the Colorado Department of Public Health and Environment. Many clinics that specialize in HIV also have social workers who can help you with reducing risk.

#4. Don’t worry about money.

You have enough to worry about when you are first diagnosed with HIV. You don’t need to add to your stress by worrying about how you’ll pay for drug treatment or doctor’s appointments. Whether or not you have insurance or a job, you can get quality HIV care and medication in the State of Colorado. Assistance with housing, food and other necessities is also available. A case manager can help you with many of these concerns and can connect you with the programs you need. You’ll be able to find a case management agency in your area, and information about what services they offer through this directory. Locate Colorado AIDS Project, Boulder AIDS Project, It Takes A Village or Empowerment and ask for Ryan White Case Management.

#5. Your best weapons in the fight against HIV are attitude and knowledge.

If anyone tells you they have a cure for HIV, don’t believe them; there isn’t one. If anyone tells you that HIV doesn’t cause AIDS, or that the HIV test is a fraud and you have nothing to worry about, don’t believe them either. Be wary of outdated information. Changes in treatment of HIV can develop rapidly so get current information from reputable web sites and publications that you can find listed in this directory. Learn as much as you can about HIV but do it at your own pace. Ask questions of your doctors and care providers; remember they work for you. You tested positive. Your test result is a piece of knowledge and knowing about the disease is a powerful tool to help you survive and thrive. Now that you know, you can do something about it. Research supports that those who have HIV feel better and live longer when we reach out to medical and other resources, talk about our status and concerns with people we trust, and do not isolate ourselves.